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Reversible changes

Cancer and chemotherapy have made some quite far-reaching changes in both my body and my outlook. Some of those changes will almost certainly be permanent, such as the much shorter outlook on life, while others have been temporary. That second group is the one I’m going to write about today.

I have written before how my sense of taste has changed, making meat tasteless, and marmite horrible. I began to notice, a couple of weeks ago, that I was once again craving marmite for my breakfast, so I tried it — carefully. It still doesn’t taste the same to me now as it used to, but the taste is once again at least tolerable.

That experiment led me to try eating steak and chips again. Previously I had found these two foods, which I once loved, we also tasteless, or even downright horrible. Thankfully the trial turned out to be successful, and steak is back on the menu again.

Turning from food to hair: I shaved all my head hair three weeks after my first chemo cycle, when I found that it was falling out of its own accord. It was simply too ghastly to contemplate the mess I would leave behind me. But rather than wait until I knew for certain that the course of chemo was over, I started re-growing it four weeks after the fifth cycle. I had thought that it would just grow back normally, but that hasn’t happened at all. Instead, only about a third of my hair came through at first. I was very glad to see it until I realized it was so thin. I was extremely concerned about it for about a week, that is until the missing hairs finally decided to show themselves. They’re still a little thin on the ground, but now I’m confident that my hair will grow back normally. Phew!

The biggest change wrought by the chemotherapy is, unfortunately, also temporary. That is, it has fought back the tumour and made it possible for me to lead an almost normal life for a while. There are still pills to take, and there is some residual back pain, but even the pain is coming under control. This reversed change is one that I have to expect will re-reverse itself in the course of time. I wish it were like my hair and my sense of taste.

09 06 2010 icyjumbo cancer Comments (6) Permalink

Post chemotherapy week 2 status

It’s been another relatively quiet week, so this post will be quite short.

The week started with a short outing to a local castle called Goodrich. We’ve been visiting it on and off for about 17 years now, so I know it quite well, and was happy to sit in the courtyard while Gillian clambered up and down all the stairs. We did walk around the moat though, and look up at the very imposing red sandstone walls. They’ve been built directly on the rock, and in some places the castle looks as though it has grown out of the rock itself. It’s a lovely place. The sandstone has weathered into beautiful rounded shapes, where every block looks different. I really like it there and was glad we managed a short visit. But that visit was combined with the long and arduous weekend ended by making me very tired, and I was glad to get an early night.

On Wednesday I got the results of the MRI scan that I had the previous week. It confirmed that the reason for my continuing back pain was that there was another small bone metastasis that hadn’t been picked up by the earlier, less sensitive CT and bone scans. The consultant had suspected as much and was pleased to find his suspicions borne out by the facts. I shall have some more palliative radiotherapy soon.

The next day I met up with a former colleague for a coffee and to look over his photos from a recent trip to Sardinia. We spent so long chatting over the photos and old times that we had to break for lunch in the middle of the session. Graham and I had a really good time, and I greatly enjoyed our natter.

The back pain seems to be making an unwelcome return. It’s more prominent when I exert myself, which is a great pity, but it does seem to respond to the Oxycodone, so I’ve been treating it with that. Not my favourite drug as it tends to make me constipated and nauseous, but when it becomes necessary, I really have no choice. However, I’m told that the nausea passes after a few days, and I can treat the constipation with Movicol, so it’s not all bad.

Here’s looking forward to a better week next week.

06 06 2010 icyjumbo cancer
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Results from the MRI scan

I saw the consultant yesterday, and we discussed how things were going in general, which is really very well indeed. He was pleased that I was experiencing less pain, and that I now need to take a reduced dose of the anti-nausea medication I’m on. He asked again where I was experiencing the pain in my back, so I showed him the two places where I notice it the most, at the bottom of the ribs on my left side, and under my right shoulder blade. He looked a bit smug, which was an unusual reaction, I thought.

The reason soon became clear, when he produced the results of the MRI scan. It turns out that he had been sure for a while that there was a third tumour on my spine, but it hadn’t shown up on either the CT scan or the bone scan, which was why he scheduled the MRI scan. It confirmed the two bone metastases on my T8 and L5 vertebrae, which we had seen earlier, but it also showed a small metastasis on my L1 vertebra, between the other two that we already knew about. The consultant said that was what he was had expected, and it would account for the residual pain that was lower down than the pain from the T8 vertebra, the uppermost of the two we knew about. The small size of the L1 tumour means that it is responsible for only a small amount of pain, which is why I’ve been feeling so much better recently. We decided, after a short discussion, to defer radiotherapy on L1 until after Gillian and I come back from our holiday in Wales. It would be a terrible shame to have the first part of the holiday ruined by pain and vomiting. Besides, there is no guarantee that it would be possible to schedule the treatment before we leave.

The final thing we discussed was a fourth metastasis, on my C4 vertebra in my neck. Well, it’s not at all certain whether it is a metastasis at all, the word the consultant used about the diagnosis was “equivocal”. We decided, as I’m not experiencing any pain in that area, not to bother treating it for the moment.

That was it. The next time I see the consultant will probably be when I go to Cheltenham for the next round of radiotherapy, and after then not for a few weeks.

This period of temporary remission is much nicer than the period of treatment. Long may it last.

03 06 2010 icyjumbo cancer Comments (8) Permalink

A busy Bank Holiday weekend

As I mentioned on Sunday, Gillian’s sister (J) and her boyfriend (P) came to visit this weekend. We had a fairly quiet Saturday, and in the evening I cooked a chicken Véronique with locally grown asparagus, which was delicious. It’s a very light, summery dish that I’ve grown quite fond of. The grapes soften and cool the sauce, but provide some interesting texture.

J+P had to go home the following day, so we decided to travel separately to a local stately home, Croome Court. It has only recently been opened to visitors, although its Park has been open for quite a few years now, and we’re fairly familiar with it. We arrived in time to take a leisurely, but direct, stroll from the entrance to the Court itself, which we looked around before lunch. Before it was acquired by the National Trust it was owned by the Hare Krishna organisation, who had painted the plaster mouldings in one of the rooms in bright colours. They had picked out every fruit and leaf in different colours, and the whole effect was really quite garish.

We carried on around the house and looked at the other rooms that were open on the ground floor. The most imposing was the Gallery, which seemed even grander because it was empty of all furniture. In fact, the whole house was presented without any furniture at all, not even period furniture, which is quite unusual for a National Trust property. I quite liked the effect, as it allowed me to see the rooms more easily for their own intrinisic merits. For example, I liked the eagle on one of the mantlepieces.

We were also able to see the basements, and the remains of the time when the house had been used as a boys Catholic school. There was a small display showing the nuns teaching, and the lockers where the boys’ kit had been stored were still in situ.

After we finished looking around the house, we found a little tent outside it, where they were selling rather good freshly made sandwiches and flapjacks, which made finding lunch easy and and eating it tasty. It was definitely getting cold, as the wind was really quite strong, so I was glad I brought my sweater with me. We didn’t linger over lunch, so that we could carry on walking and get warm. The wind provided some moments of hilarity, at least for the others if not for me, as it kept blowing my hat off whenever I tried to take a photo. I couldn’t fit the camera under the brim without lifting the hat off my head, which made its fit much less secure. I lost it more than a few times, luckily never in the river along which we walked after we left the house.

We made our way the long way, past a fake Greek pavilion and a grotto, to the Temple Greenhouse, beyond which we could see the Malvern Hills.

From there we walked back through a shrubbery towards the church, which was also built at the time the grounds were laid out. This picture was taken, however, from the path to the Court rather than the path through the shrubbery.

J+P left at that point, in order to visit another stately home on their way back to London, and we returned home to await the visit of another of Gillian’s friends, who brought her two newborn twins to visit.

Rather than sit inside on such a lovely day, we drove into Malvern town centre, and walked around the local park, eventually stopping for an ice cream and to listen to the brass band playing in the bandstand. That was quite fun, and I was impressed with how beautifully the two babies slept through all the new and different sensations. I was grateful too, as I know very little about dealing with babies, and have no inclination to learn.

The babies did eventually wake up hungry, so they were taken home and we drove, very tired, back to our own home for a quick evening meal and an early night.

The following day was a Bank Holiday, but Gillian was determined not to let me rest, no matter how  busy a time we had had the previous two days. She says that she wanted me to explore my limits before we go on holiday next week. We drove for about 45 minutes to a local Welsh Borders castle called Goodrich. We’ve been visiting it for many years now, ever since Gillian was learning to drive, so I didn’t feel the need to go up every staircase and down into every cellar. Gillian was determined to miss nothing, so clambered to the top of the keep, up the darkest and narrowest staircase in the place. She looked a little wobbly once she came back down again, so I was glad I had declined. Moreover, she complains of a sore leg every time she sits down or gets up again today, confirming me in my decision. I have no sympathy… after all, she was the one who said that we should explore our limits. In fact, I think both of us exceeded them this weekend, as we could hardly keep our eyes open yesterday evening, and I spent most of the evening flat on my back, having returned to the sofa to rest. Everything has turned out OK today, apart from Gillian’s aching legs, so I guess it was a good idea to have pushed ourselves as hard as we did. I think we’ll probably be worked harder than that next week, and we need to be ready.

All in all it was a good weekend, if hard work. That I was able to do as much as I did is testament to how much better I am now that the chemotherapy is over.

01 06 2010 icyjumbo cancer
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Post chemo week 1 status

On Tuesday this week Gillian had another birthday — tact prevents me from telling you which one — but we had a lovely lunch at a good local pub restaurant with some of her colleagues from work. It was a surprisingly jolly occasion, given all the stress at work recently. To celebrate in the evening I cooked a tarragon soufflé using Nigel Slater’s immaculate recipe. The only way in which this recipe ever fails me is when I don’t cook the soufflé for quite long enough, which is not his fault, but my own. The soufflé should wobble when cooked, but not “alarmingly”. I think I must be too easily satisfied about what is no longer alarming… But it turned out pretty well this time, and we really enjoyed it.

The following day we went to Worcester for the regular weekly clinic to get the results of my CT scan, to have an MRI scan, and to find out whether I would be having any more chemotherapy cycles: no, I won’t,, thank goodness! It has been a real relief to know that I won’t have to suffer the effects of the chemotherapy any more, and I’ve noticed almost immediate benefits. For instance, I haven’t had to spend any more time flat on my back on the sofa to rest, as I’ve had a lot more energy, and been in a lot less pain. I’ve also been able to take up my share of the housework again, which pleases me at the moment, although I may come to regret it.

It has been a very busy weekend yesterday and today. Gillian’s sister and her boyfriend came to visit, bringing a gorgeous bottle of Cloudy Bay Sauvignon Blanc with them. We shouldn’t really be drinking, but we both had a sneaky (small) glass each, and it was delicious. Thank you P+J, we really appreciated the kindness. This morning all four of us visited a local stately home, Croome Court, and its Park which is run by the National Trust. We spent the morning walking slowly through the Park to the Court, where we had lunch, and then wandered around the Park a little more. It’s the most exercise I have taken for at least eight months, and I feel very proud of myself. I expect to sleep very well tonight.

As if that weren’t enough exercise, another of Gillian’s friends came to visit with her newborn twins, and rather than stay indoors we went to the Winter Gardens in Malvern, where Tewkesbury Town Band was playing in the bandstand. That was fun. It was only a short stop, however, as the twins grew more and more fractious by the minute. An altogether exhausting day, but very enjoyable, and a big achievement for me in my current condition, and a good end to a great week.

30 05 2010 icyjumbo cancer
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Handing back the pump

By Gillian

So yesterday we handed back the Walkmed pump that Chris has been umbilically attached to since January. And now that it’s gone, it’s a huge relief to both of us.

The pump was about half the size of a paperback book, and came in a black padded “bum bag” that Chris kept around his waist at all times 24/7, (except when he took a shower, when it went into the boat bag). In the bum bag was also a plastic pouch containing an 8 days’ supply of 5-FU, which was delivered via the pump and a thin flexible plastic tube that was plumbed into the PICC line on the inside of his left elbow.

The odd thing was that Cheltenham and Worcester hospitals used different pouches. The Cheltenham one was larger, about the same area as the pump, and had a tube that was just long enough to go up inside his shirt, and down his sleeve to his elbow. The one from Worcester had a pouch half the size, a much longer tube (so much so that the excess had to be coiled up inside the bum bag), and also had a filter the size of a 10p piece which was taped to his upper arm using micropore. Chris was talked though the care and maintenance of the pump gubbins at Cheltenham as part of his first chemo cycle, and they emphasised the necessity of keeping the pump and PICC dry. But they didn’t mention the filter, as their kit didn’t use one. So for the first week after Chris got the bag changed at Worcester, he didn’t bother keeping the filter waterproofed during his showers. That was a mistake – a small amount of 5-FU leaked out and burnt his skin. We learned from that, and subsequently kept the filter inside the waterproof sleeve.

The 5-FU dosage was based on Chris’s weight. The Cheltenham dose was 0.63ml/hr; the Worcester dose being twice as concentrated was 0.31ml/hr, and the nurses triple-checked the programmed dose each week.The pump whirred for around a second every 30 seconds, day and night. It wasn’t a particularly loud whirr, but at first I found it very irritating. After a few weeks though I got almost used to it, but I have to say that I don’t miss it at all!

The really annoying thing though was the alarm. If the line got a kink in it (usually by Chris bending his arm too much) then the Walkmed would start beeping intrusively.  Once the alarm went off he had to take the device out of the bum bag, identify what the alarm was complaining about, stop the pump, rectify the problem and restart it. Tedious. At least it was fairly easy to avoid “occlusion” alarms once we’d learnt what caused them – it just limited how he could sit and lie, because he needed to keep his arm pretty straight. The one I always dreaded was the insistent “Battery Low” alarm. One had no control over when that happened and there was no audible early warning.  Even though we kept a spare battery in the pouch at all times, it was quite a fiddly operation to change it. I was worried that it would go off when we were out at the theatre, for example, which would have been very embarrassing. Fortunately, we always happened to be at home when the battery needed changing.

Chris was getting really really sick (both literally and metaphorically) of being plumbed into the Walkmed day and night for so many months. It’s great that it’s now done its job and we’ve handed it back. Life is much more peaceful now.

27 05 2010 Gillian cancer Comments (11) Permalink

Free at last!

Got the results from the CT scan, and they agreed with the clinical evidence I was presenting, namely I was feeling a lot better, so it was decided that I would receive no more chemotherapy.

Specifically, the CT scan showed that there have been minimal reductions in the size of my enlarged lymph glands, which is what is expected in the latter stages of chemotherapy; that there are no new metastases, which is very good news. Essentially that means that the chemotherapy has done its job, and although one more cycle was originally scheduled, the consultant decided that it would simply be piling on the toxic effects with very little, if any, associated benefit. His advice was therefore to stop the chemotherapy. I was very happy to go along with that.

After finishing my conversation with him, I turned to the palliative care consultant, and we discussed the management of my pain. I had been doing very well with the diclofenac three times per day, taking a little extra oxynorm (a liquid form of the opioid oxycodone) whenever I had any breakthrough pain.  Now that we know how much of that I need, we have decided to replace the liquid with a slow-release tablet form of oxycodone, which should more than replace the liquid form, but should give more lasting pain relief. We also discussed how I should reduce the dose of metoclopramide, an anti-nausea drug, and decided that as we were changing my pain-control regime it would be better to wait for a week while I changed one thing and saw what the effects of that were. But soon, soon, …

A few minutes later I was sitting in the treatment room having the PICC line removed from my arm. I was surprised that it didn’t bleed at all, considering the size of the hole that it left behind. I have a dressing which I should remove after 24 hours, but it isn’t expected that there will be any problems with it.

Finally, after a short wait, I had my MRI scan. This one was of the whole of my spine, rather than just my head, so it took nearly an hour. By the end of that session my back was completely seized up, but a few minutes walking around freed it sufficiently for me to be able to drive home. I’ll be back again next week to discuss the results of the MRI scan with the consultant,  but then I shall have no more appointments for five or six weeks. As the title says: free at last! At least until the tumour starts growing again, which is, I’m afraid, almost inevitable. Still, free for now, and time to look forward to our holiday in June.

26 05 2010 icyjumbo cancer Comments (9) Permalink

Cycle 5 week 5 status

Once again no chemotherapy this week. Nevertheless it has been a fairly quiet week, where things of note included a CT scan, a trip to the theatre and another increase in the incidences of my back pain.

The CT scan took place early in the morning, which meant that it was hard to get there on time, but easy to park, in direct contrast to our normal trips to the hospital. It was interesting to see that some of the remodelling happening in the hospital was going to lead to an improvement in services to patients this time, as a second CT scanner was being installed as part of the remodelling.

The theatre trip was fun, and much less painful than I was worried it might be. The best bit about going to see a whodunnit is trying to work out who the murderer is, and what is his/her motive. With Agatha Christie you always know that the obvious suspect in the first half of the story is never the one who turns out to have done it, so I found it very satisfying to work out who the murderer was and their motive. (Notice the care with which I’m describing this. You shouldn’t be able to tell anything about it from what I wrote, so no spoilers here.)

Finally, although my back is still painful, I’ve found that Oxycodone, in its liquid form, is a good supplement to the diclofenac, which is the main painkiller I take. I’ve been writing down how much and how often I’ve taken it, with the aim that the palliative care team will be able to titrate a more convenient dosage for me next time I see them, i.e. next Wednesday.

This coming week ought to have a little more interest to it. I’ll get the results of the CT scan; I’ll be having another MRI scan to try to determine the cause of my back pain, and I’ll find out whether the chemotherapy is to continue or not.

23 05 2010 icyjumbo cancer
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Witness for the Prosecution

We went to the theatre this afternoon to see Agatha Christie’s play Witness for the Prosecution, which was put on at the Malvern Festival Theatre, our local. I don’t think it was one of her best, but it was quite fun, and the actors — a professional touring company — did a good job of playing it with verve, so the audience mostly seemed to enjoy themselves.

The plot concerns a man accused of murdering an elderly rich woman who he had befriended. He is down on his luck, and all the circumstantial evidence is against him, when one of the key defence witnesses changes their testimony and things started to look extremely bad for him. Can his barrister find a way to convince the jury that he is not guilty, in spite of the weight of evidence against him? You’ll have to see the play yourself to find out, because I don’t want to spoil it for you.

I was a little concerned about spending a couple of hours sitting on theatre seats after the difficult time I had during the recording of I’m Sorry I Haven’t a Clue, but I needn’t have worried. The pain largely held off until half an hour before the end, and a quick dose of painkiller put paid to that. It was a much more comfortable experience. Of course, the chairs were different, which may also have had an influence. Altogether, I’m pleased that we made the effort to go.

22 05 2010 icyjumbo Day out Comments (2) Permalink

A third CT scan

Last week it was decided that whether or not my chemotherapy continues would depend on the results of a third CT scan, which the consultant said he would organize. I still hadn’t heard about a date for it so when I spoke late last week on the phone to the Macmillan nurse (who has been helping immensely with palliative care) she said she would do some poking around and try to make sure it happens.

Yesterday afternoon she phoned back to say that she had finally managed to persuade the radiology department to give me a cancelled appointment so that I could have the results before seeing the consultant next week. It sounded as though she had been led all round the houses to make it happen, so she must have had to have been very persistent. She had also rearranged my scheduled MRI scan so that it would take place on the same day as the appointment with the consultant, saving me an unnecessary trip to Worcester. She really is extremely kind and conscientious, and I’ve been enormously impressed with her attitude and effectiveness. The only downside was that the appointment was for today, at 08:30 in the morning, a time at which I am normally just finishing breakfast. Getting to Worcester for that time would mean leaving the house at 07:30 and getting up considerably earlier than I am used to. Not a prospect to relish, especially these days. Still, it was important to have the scan done in time for next week’s consultation.

We did get there on time — slightly early actually, so Gillian was able to have a cup of tea and a pastry as her breakfast. My breakfast was delayed so that my stomach would be empty when scanned to make seeing the tumour easier. But arriving early has its benefits too: parking was simple as the car park was nearly empty; and we were seen on time as I was first on the list. I was in and out within half-an-hour.

It was interesting to see that the chemotherapy/haematology suite is not the only one that is undergoing changes. We arrived at the CT department to find the door locked and a sign directing us to follow the arrows to the temporary reception. We walked along several corridors making at least three turns until we finally found ourselves entering at the back door. I was signed in, and taken through to the inner waiting room, where the nurse explained that they were having some remodelling done so that they could fit a second CT scanner in. So not all change in Worcester Royal Hospital is bad for patients, I thought.

20 05 2010 icyjumbo cancer Comments (4) Permalink